Apple has long been associated with technological innovation, but has established a new focus on health applications. Apple’s new ResearchKit software focuses on collecting user health information for device owners as well as medical professionals and researchers. The company and some researchers tout the new developments as positive steps toward research advancements, others are wary of the accuracy of collected information. As with all health data, privacy, and confidentiality concerns are prevalent.

What is ResearchKit?

ResearchKit is more than an app – Apple describes it as a software framework that allows users to volunteer for medical studies. Simple tests are provided that allow users to submit data related to various diseases. So far, tests are available for Parkinson’s, diabetes, cardiovascular disease, asthma, and breast cancer. The device’s microphone can be used to detect vocal variations in a user’s voice. The touch screen allows the device to test for the development of Parkinson’s and other diseases by asking the user to tap rhythmically on the screen. Users can also test their ability to walk in a straight line using the built in accelerometer.

Who’s involved?

Apple worked with a well-regarded dozen research institutions while developing the app. Apple does not see the data, which is received by medical researchers. ResearchKit is open source, allowing researchers to continually develop new tests. Once the data is collected, it’s not all fair game – users can give permission for how their data is used.

Motivation

Medical research studies can take considerable time and resources to organize. Recruiting appropriate subjects for studies is a huge obstacle, considering that some labs advertise by posting flyers on college campuses. Tactics like these result in small sample sizes that are not appropriately diversified, leading to data that is inaccurate or unable to be applied to larger populations.

Dr. Todd Sherer, the CEO of the Michael J. Fox Foundation for Parkinson’s Research, admitted that finding clinic-based trial participants is often a challenge. The foundation worked with Sage Bionetworks to develop the mPower app included in ResearchKit. It also plans to incorporate its new data-collection initiative, Fox Insight, with its app.

Reception

Although Apple solicited considerable input from and collaboration with professionals from the health industry, ResearchKit has many providers and researchers very nervous. One of the biggest worries is that the data will still come from a biased group. Data indicates that iPhone owners are more likely to be affluent and hold advanced degrees, limiting the demographic that will submit information in this manner. And although minors are prohibited from engaging in medical studies without the parent or guardian consent, the apps let participants lie about their ages and then change their ages to meet the eligibility criteria for the particular studies.

Data accuracy is another concern. The tools built into the device allow researchers to get data that might be more accurate than something that is self-reported by guessing. However, the tools aren’t foolproof and verification may be difficult. Others are worried that an accidental submission or handing off a phone to another user might skew data. Additionally, open ended questions are an important part of trials, which helps reduce triggering of false memories and bias. The ability to ask participants questions beyond the “yes or no” format is limited. The lack of one-on-one interaction also prevents users from asking questions and receiving clarification from resaerchers.

The public doesn’t necessarily share these qualms, indicated by Stanford University’s report of 11,000 signups for a cardiovascular study in less than 24 hours. Alan Yeung, Stanford Cardiovascular Health medical director, said that it would take the collaboration of 50 medical centers one year to recruit that many study participants. Todd Sherer said that the Parkinson’s app had over 5,500 enrollees the morning following the release of the app. Normally, a traditional study over five years involving 800 participants would cost around $60 million.